Christmas Revisited

Christmas 001I’m not even apologizing for my tardiness this time. I just looked back and the last two blog posts begin with some kind of mumbled excuse for being late. I’m not doing that this time … at least, I wasn’t going to.

We got through Christmas. Or should I say, most of us got through Christmas. Some of us didn’t. There are those of us who believe they’ve been chiselled out of Christmas, that the Christmas they got was a non-event. They’re not letting us forget it. And so begins a tale of despair, misery, hope, and finally, a tale of triumph … or at least semi-triumph. You still with me? Comfortable? Good. Let’s go …

The week before Christmas, all through the house, nothing was stirring … my Girl included. She slept long and she slept hard. All I could see of her was a little face, nestled amongst the pillows. The doctor had set up a pump to deliver pain medication. All her other meds had been discarded. As they say in times of disaster, we were prepared for the “Big One.” So we waited. And waited.

For almost a week, she slept.

For the entire time, I hovered over her, brow furrowed, lip clamped between teeth. Watching, waiting.

Suspecting this really was the end, we had Christmas on the Saturday. We crushed as many as twelve people into her room, all sitting around the bed with hopeful looks on their faces. We sang Christmas carols, pulled Christmas crackers. Still she remained unconvinced.

So on the Sunday, the Chukker-boy dressed up as Santa, simultaneously delighting the Girl, and psychologically scarring the Grandson forever. No dice. She didn’t believe a word of it. She knew Christmas still hadn’t arrived. Not really. But with her energies exhausted by two Christmases spent, she slept once more.

Watching over your child as her life ebbs away is strange sensation. It goes against every instinct. Mothers by their very nature are duty-bound to keep their children from harm. We care for, we nurture, feed and support.

So to sit by, refraining from offering the necessities of life, watching on helplessly while your child fades away—despite the obvious problems, regardless of the situation—well, it feels foreign. No one said caring for the terminally ill is easy. There’s a reason for that.

So at a point when I thought I had everything under control, when I’d reached that moment of acceptance and my stress levels plateaued. With my inner calm radiating stoic resolve, and my focus shifting to the near future, my counsellor suggested a few days of respite with my Girl in the hospice.

I hesitated. By all accounts, I had a handle on things: Inner calm: Check. Grip on reality: Check. Sensible brain engaged: Check.

Then I thought, “Why not? The offer may be a one-time opportunity.” So, not wanting to look a gift horse, I bundled my Girl, her medication, a few hurriedly-collected clothes, and Booboo the bunny rabbit into the car, and happily took off to the hospice.

Did I dance the dance of the free? Did I race about catching up on my shopping, the latest movies, my last minute Christmas shopping?

The hell I did.

The instant I got home, I flopped on the couch. Inertia set in. I couldn’t move. Some swine must have slipped into my house while I wasn’t looking and sucked every ounce of energy out of me. My limbs weighed a couple of hundred kilos each. Every now and then I managed to raise enough oomph to open my eyes and let out a groan. Meals consisted of shortbread biscuits and chocolate from prematurely opened gifts (the wrapping from which now formed my only living room Christmas decoration, since all other decorations [tree included] had been transported to the Girl’s room). Occasionally when it got dark, I rolled off the couch and crawled to bed. For four days, my bed went unmade, the dishes undone.

Eventually, I found me again.

I began to think straight. I drank liquids without an alcohol content. I ate foods that boasted a level of nutritional value—albeit low. I showered. I applied makeup.

Then I visited the Girl.

While she slept, the wonderful, fabulous hospice medical team ran tests, watched over her, cared for her. They stabilized her meds, fed, watered, and washed her. And on the fifth day, she rallied.

Yep. Just in time for Christmas.

She was thrilled. But it wasn’t exactly what she’d envisaged. Our traditional Christmas with family didn’t eventuate. The seventy-five dishes of foods I would normally prepare (simply because I can) never got made. The Chukker-boy and family didn’t arrive. It was me and the Girl. We had a hospice prepared Christmas dinner. We ate to the sound of her CD player pounding out Snoopy’s Christmas for the 76,830,654th time.

And at the end of Christmas day 2013, exhausted and fed, she thanked the doctor for the presents I bought her, thanked the nurses for the TV I bought her, then settled down to sleep.

Now she’s home. It’s like we’ve been in a time bubble. She wants Christmas. She wants to paint Christmas, eat Christmas, live Christmas. She wants the whole Christmas experience from go to whoa, and she’s not taking “No” for an answer.

Me? I’m over it. She can have her Christmas CDs, her decorations. After that, I’m putting my foot down. Christmas is gone. There’s another one at the end of this year.

In the meantime there’s a birthday in six months. For once, I’m looking forward to it.

Advertisements

Leave a comment

Filed under Christmas, Coming to the End, Grief

And So This Is Hospital …

My Baby Girl

My Baby Girl


I began writing this a few days ago. I didn’t finish. I needed to.

So here it is …

Thursday, I busted my Girl out of hospital. It was a raid worthy of a crack military team. Okay, maybe not that worthy, but it was close.

She was in there because her blood sugars had been hovering at a staggering 30 mmol/l. In the American system that’s 540 mg/dl. In any system, that’s ridiculous.

The doctors immediately put her on an insulin drip and put her on a ward.

Now, let me paint you a picture. Hospitals are the places you go to get better. They are not the places you go to get comfortable. They are not places of peace. Now that I’ve got that out there, you’ll begin to understand where I’m coming from on this.

My Girl starts out in Observation. They need to get a grip on her blood sugars then transfer her to a ward. I wait with her for four hours. At 5:30 p.m. I reluctantly leave.

I return on Day Two to find her in a ward. She’s sharing a room with three others. All women. All over 80 years in age—a couple maybe over 90. I suspect my Girl is in this particular room because it offers her some company. Although not from the old dear opposite in Bed 1. She mostly sleeps. Every now and then she lets out a wail. It’s disconcerting. I want to nip across and comfort her. I’d probably make things worse.

I’m just getting settled, comforting my Girl, when a nurse sweeps in. The old dear diagonally opposite in Bed 2 informs the nurse she’s going home today. The nurse tells her gently that she’s not going home, that’s she’s staying in the hospital, and then sweeps out. Next to us, the third old dear in Bed 3 gets up and paddles off out of the room. The nurse sweeps back in. Bed 2 tells her she’s going home today and Bed 1 wails in pain. The nurse administers medication to Bed 1 and tells Bed 2 she’s not going home. Bed 3 paddles back into the room to advise the nurse of the horror she’s just discovered—the doors are locked and she can’t get out. The nurse gently guides her back to her bed, telling her not to worry and that she’ll check the door.

She prepares to sweep out again, and checks my girl’s blood sugars. They’re still raging. Bed 3 gets up and paddles off down the corridor again. The nurse tells me the doors are locked, even at visiting time because if they weren’t, they’d lose 75% of their patients within the first five minutes.

I sit with my Girl for a total of five hours. Over this time, the scene above is played out over and over. The Girl’s blood sugars persist in the late 30’s. By the end of the day, Bed 3 is still paddling around and around, Bed 1 is sleeping and wailing, Bed 2 can’t understand why she isn’t at home. I’m exhausted, my Girl is sleeping, so I leave.

On Day Three I catch the doctors doing their rounds. Amongst them is the liver specialist. He tells me nothing I don’t already know. He tells me the girl’s insulin-resistance is puzzling.

Really? I mean, Really?

I request the palliative team’s involvement and settle back to my vigil. My Girl is mostly sleeping and I have so much to catch up on back home. The washing has piled up, the floors need cleaning, the dog has forgotten who I am. I kiss my Girl and head home.

On Day Four I sit with my Girl for another five hours. I bring my own lunch but it’s costing me a fortune in parking. I request some kind of parking concession since I’m here feeding, washing, toileting my Girl. The nursing staff put in a request. They advise me it takes at least 24 hours.

On Day Five, I arrive at the hospital. I cannot say how sick I am of hospitals. I hit the door bell. As the doors swing open, I walk in passing Bed 3 who’s walking out. At the nurses’ station, I report another attempted escape. They dispatch two nurses to retrieve Bed 3 and catch her at the stairs. She’s gently guided back to the room.

When I get there, my Girl is gone.

My first reaction is panic. Then I realize they would have informed me if something dire had happened. I’m told she’s had a restless night and she’s been moved to another room.

There’s good news, and bad. My Girl’s blood sugars have dropped. I’m ecstatic! They’re down to a sensible 9.2.

But now her abdomen is distended from sitting in a bed all this time. She’s retaining water and she’s in pain. The doctors are doing tests. They’ll get to the bottom of it. That’s their job. They test her blood, her urine, her stools. They put her through an x-ray, a CT scan, an ultrasound. They’ve already put her through every test known to man, and I suspect they’ll put her through a car-wash next.

Now she looks even sicker than she was when she went in. Her face is puffy, her stomach swollen. I go home depressed and feeling as though I’ve let her down.

I lie in bed that night, worrying. All I can see is her face. She’s in pain, she’s unhappy. Then the thought hits me—she has to come home. I don’t care if I have to fight them. I’ll take all responsibility. My Girl doesn’t want to be in the hospital. She wants to be home with Boo Boo her bunny, and Lilly Lion, and Dead Cat. She wants to be in her room, in her bed with her toys and her Smurfs and her music. She needs to be at home with her mummy.

The next morning I call and speak to her nurse on duty. I tell her I’m coming to get my Girl. The nurse says she’ll have to tell the consultant. I tell her that’s fine, tell whoever, but I’m taking my girl home.

As soon as I’m dressed and ready, I storm in there. The door opens and I burst in, passing Bed 3 who’s on her way out. I inform the nurse that Bed 3 has escaped and demand to see the consultant. I’m told that the parking concession has arrived, but it’s can’t be applied retrospectively. I say I don’t care, I won’t need it. I’m taking my Girl home.

Then the consultant appears. I’m ready for a fight. I know my rights. I’m prepared to thump my fist on the desk and demand my Girl’s release. But the consultant is in the process of completing the discharge papers. She tells me she thinks it’s the right decision. The charge nurse appears, telling me she agrees. We order an ambulance, and pack the girl’s belongings.

She’s coming home. She’s coming home and I couldn’t be happier.

Yes, it’ll be tough. Yes, it’ll be terrifying. But it’s all about quality of life.

So here are a few rules I picked up along the way:

1. Do not ask the doctors if there’s anything else they can do. They’ll find something.
2. Sometimes, one more test is one test too many.
3. If you are the main caregiver for a terminally ill person, it doesn’t matter if you don’t have a title or initials around your name or a plaque on the wall, you probably know more than about your terminally ill loved one than anyone else.
4. There is no cure—there’s only comfort.
5. It really is about quality of life.
6. And finally, there is nothing more important than being surrounded by love, good intentions, and home.

In my next blog I’ll address caring for the terminally ill at home. It’s more incredible, more frightening, more fulfilling, and sometimes more hilarious than you could ever guess …

4 Comments

Filed under Uncategorized

More Stress, Anyone?

The Candidate's DaughterI have a nightmare.

I’m sitting at the Antiques Roadshow and in my hand, I have a small vase. The vase is narrow, with two tiny handles on the sides, and a hallmark underneath that I suspect means it’s worth something.

I’m horribly nervous. The more nervous I get, the more I fidget. Finally, the vase expert is almost ready to see me. He tells me he’ll be over shortly. I’m picking up the vase, wondering at its value. I’m turning it, turning it until…

… one of the little handles snaps off.

I’m horrified. I dig a tube of superglue out of my bag and carefully glue the handle back on. I’m devastated because it’ll have lost value, but hopefully not too much. After all, it has those hallmarks. That means it could still have some value. Again, I pick up the vase to check them. But in doing so, the lip of the vase hits the table and a tiny chip flakes off.

Dammit!

Again, I’m out with the superglue. I carefully glue the chip back into place and set the vase on the table. I must not touch the damn thing again. I reach across, just to position it once more, to find that a drop of glue has found its way onto the table and the vase is stuck fast. I wriggle it, tug it, then wrench it loose. Suddenly, the top of the vase is in my hand but the base is still stuck to the table.

That’s the nightmare. But it feels like it’s coming true. And it’s all down to my current stress levels.

Let me explain.

We haven’t been sleeping. The Girl has had entire nights without sleep. That goes for me, too. The dog has also complained, but I figure he can sleep at any other time and still refuses to help out with the housework, so he doesn’t really count.

I took the Girl to the dentist. I knew she had an enormous cavity, but now we’re worried it’ll abscess and we’ll be in emergency territory, so it’s time to do something about it. I have an appointment with the hospital dental department next Tuesday. On Wednesday I’m taking my mother to her eye specialist for her glaucoma. On the same day I have an appointment with my counselor (thank God). Later in the week I have appointments with the Girl’s liver specialist and the diabetes clinic.

So what better time to organize a promotion on my book, The Candidate’s Daughter.

That’s right, there’s a new promotional opportunity in town. It’s called the Kindle Countdown and it gives me the opportunity to discount my book in the US and the UK, and drive myself completely around the twist at the same time.

So I book the promotion in my Amazon page, selecting dates in the third week of November, then book and pay for four advertising slots with various advertisers. I also submit the details to a top advertising organization called Bookbub. Now, if you want results, Bookbub is the place to go. Submitting to them is like sitting at the Antiques Roadshow with that vase in your hand. Having Bookbub select a book for advertising is the equivalent of having the vase expert indicate that he’s on his way over.

And the nightmare begins.

Bookbub send me an email to say they’ve accepted the book, but not for the dates I wanted. They are the pinnacle of e-book advertising. I’ve heard of books reaching 65,000 downloads on the strength of their advertising. That snap you just heard was the handle of the vase coming off.

I accept their new dates. They’ll promote my book from November 14th to November 17th, so I confirm. Now I’m scrambling; desperate to change the dates with the other advertisers. That’s me gluing the handle back on the vase.

I think I’m just about done. I’m just sitting back and taking a deep breath, when I notice the price of my book has inexplicably changed from $2.99 to $3.77. I try to change it back, but the pricing is greyed out and I can’t. I email Amazon. They tell me it’s to do with territories. I then realize the book is only available at the promotional price in the UK and the US. That’s fine. Everything is in place. A couple of advertisers can’t accommodate me, and one can at a higher price.

At last, I can relax. I have to. The stress from all this has triggered a high-pitched ringing in my head. I need to step back and let the promotion run its course. I have too many other things going on in my life.

But I can’t help myself. I just have to check I have the dates right. I change them to make sure the correct price will be in operation when the promotion starts. This is the equivalent of tipping the vase over to check the hallmarks. When I come back later to check that everything is in place, I see my book isn’t live, it’s a draft. The chip is now lying on the table. I upload the file again. I know I can’t check it for another twelve hours, but I don’t know what else to do. This is me gluing the chip back on. It’s a mess, but I have no other choice. I go back to check the status to discover the publication dates have changed.

What!

The damn vase is now stuck to the table because I can’t change anything for another twelve hours!

Aaarrgghhh!

I write to Amazon. I’m sending them crazy. I’m sending myself crazy. My counselor tells me she’s glad I’ve got something else in my life. I’m wishing I didn’t. I make a note to tell her I’m way crazier than she thinks.

But here’s the thing. I don’t think I’m alone in this. I think it’s a symptom of someone facing the inevitable when caring for a terminally ill loved one, and trying to keep control of something.

Next week, beginning November 14th is my book promotion. I discovered that the amazing Karen Dionne is also promoting her thriller, Boiling Point. It’s a fabulous read. It’s the perfect time to grab it along with The Candidate’s Daughter. I suggest you get both.

And wish us luck. I, at least, am going to need it.

1 Comment

Filed under Uncategorized

When You Hit Those Rocks … Yet Again

There'll always be, for you and me...

There’ll always be, for you and me…

Yes, I know – this post is really late. The reason has nothing to do with apathy or laziness. I wish that were the case. It’s all to do with energy levels. And I wish I had some.

As some of you may have noted, I put a note on Facebook a week or two back, advising my friends that my Girl had slipped into a coma. I can’t tell you how much the love and support from all of you meant to me. So, here’s the story behind that post:

My sister Chookie Lou arrived on the Thursday. We figured that was an auspicious day to invite the entire family over to lunch. Yes, that’s right, I don’t have enough stress in my life so I feel it necessary to create more.

I admit that up until then, I’d been lax. Despite the Girl repeatedly reminding me, here it was mid October and I still hadn’t put up the Christmas tree. So Thursday afternoon, I spent a half hour wrenching fake Christmas tree branches into position and decorating them while the roast cooked. At 4 p.m., Chookie Lou went to pick up Mum, but while she was gone, I got a call from the Girl’s program to say the Girl wasn’t well, so as soon as she came in the door, I showered her and put her to bed.

I thought she’d picked up a bug, so I didn’t give her dinner. Instead, I gave her water to keep her fluids up, and at 9 p.m., after everyone was gone, I went to tuck her in and give her more water. She looked dazed and floppy. When I asked her if she wanted anything, she didn’t respond. So I called an ambulance.

Chookie Lou and I followed the ambulance to Accident and Emergency at North Shore hospital. By the time we got there, the girl was unconscious, only responding to discomfort.

I couldn’t believe it. Seriously, she did not look that bad. I kept telling Chookie, “She didn’t look this bad.” She agreed, but it made no difference. In what seemed like a matter of moments, my Girl had become seriously ill.

We sat with her, going through countless scenarios of what could have happened had I not called the ambulance when I did, when a nurse swept in and took our details. I asked how long the wait was. She told me they were incredibly busy.

“Incredibly busy” isn’t good. I once sat for eleven hours in Accident and Emergency. I told her this was not my first choice. She took one look at the Girl, one look at me, and said, “I have a friend with a disabled boy. She never brings him in unnecessarily either. I’m going to get the doctor.”

We heaved a sigh of relief and gratitude. Two minutes later, the Girl was surrounded by doctors and nursing staff. They X-rayed her, took a Cat scan, put in a catheter, and told me she was in a very bad way. How far did I want them to go to resuscitate her? Did I want them to operate? I told them I wanted nothing invasive, nothing traumatic. Yes, just let her go quietly.

They told me not to worry, I’d made a good decision. I told them it didn’t feel that way. I told them that I when she was stable enough, I wanted to take her home. I didn’t want her dying in a hospital bed. I wanted her to be among her toys and in her beautiful room with all her beautiful things around her. I wanted her to be in a place that was comforting and familiar. They told me it would be hard work, that I’d need support. I told them that’s what she’d want. That’s what I’d want. So at 2 a.m. Chookie Lou and I left my Girl in the A&E, and reluctantly went home.

I woke early the next morning, wondering where I’d find the strength for the next few weeks, months, years, without my Girl. I wandered into her room, looking at all her artwork on her walls, at her beloved toys, at her life here with me. I had no idea how I could let it go. It was too soon. I wanted to call up the hospital and tell them to do everything, everything they could to keep her with me. But at the end of the day, I knew I was only postponing the inevitable. I would only have to go through this all over again. And I didn’t want my Girl to suffer.

At 9:30 a.m. Chookie Lou and I went back to the hospital. My Girl had been moved to Ward 10. The very top of the hospital, in her own room. I knew she’d like that.

But as we entered her room, to our astonishment, the Girl was awake.

“She’s conscious,” I said.

“Yes,” the nurse told me. “But she’s very weak.”

I took my Girl’s hand and said, “Hello, Baby, you gave us a fright.”

She gazed up at me and said, “Eeeeeecccks Boooooox Gaaaaaammmes.”

“Really? I mean, really? You come out of a coma and you’re asking for games?”

“P-p-preeeessssents,” she said.

“This,” I told Chookie Lou, “is what brings her back from the brink. X-Box games and presents.”

“She’ll want Christmas next,” Chookie told me.

“Chhhrrrriiiistmaaaas,” said the Girl as she flopped exhausted back onto the bed.

“Dear God,” I said. “I can’t believe it.”

“You know what?” said Chookie. “I think I can.”

This is the fourth time this year that we’ve played out this scene. Not once has the emotion or the stress or the trauma been any less than the rest. Each and every time, we prepare for the worst. I have it on good authority that this is not unusual; that although people believe that the last months or years of a terminally ill person’s life are a steady decline to the end, it rarely happens that way.

What really happens is a series of traumatic, life-stopping, brain-numbing races to the hospital. It’s a series of heart-breaking realizations, one after the next, after the next, that this is the one – the final one; that there’s no going back this time. What really happens is you keep riding this rollercoaster of constant peaks and crashes. You got through the last one and now there’s this one. If you get through this, there’ll be another. But you never know which one will be the last. You just hang on and keep rolling with it, knowing that somewhere around one of these bends is the end of the line.

I know I’ve said this before, but please think about this: If you know someone who’s caring for a terminally ill loved one, chances are this is what they’re going through. It’s a tiring, traumatic job, and there’s rarely room for anything else.

So here’s my plea: don’t wait. Call them up. Tell them you’re thinking of them. Cook them a meal, send them a card, make them feel they’re not alone.

Because this is a job that no one signs up for. It’s a job with set hours of 24/7. It’s a job with no perks, no set holidays, and there’s only one way to sign off.

And they do it all for love.

9 Comments

Filed under Uncategorized

I Don’t Understand, and I Won’t Remember, So I’m Not Listening.

My Bed

My Bed

In my day-to-day life, I deal with a Girl who listens and remembers, but doesn’t understand; a mother who listens and understands, but doesn’t remember; and a dog that remembers and understands, but doesn’t listen.

I swear, when I’m old and gray I’m hanging a sign around my neck that says, “Unless you’re incredibly interesting or telling me how much you loved my book, I don’t understand, and I won’t remember, so I’m not listening.”

I know, right? It’s a proven formula.

In the meantime, I have other issues to deal with. If you’ve followed me on Facebook lately, you’ll know that the most interesting conversation I can offer revolves around how much sleep I’ve had—or rather, how much I haven’t had.

The Girl goes through periods where her entire internal engine seems to seize up. I’m not going into details here, suffice to say that at times her care management becomes incredibly challenging. Take Friday night. She had dreadful diarrhea. I had care support in overnight, but even so, I didn’t get to bed until 11 pm. That was okay. I got some sleep.

Saturday turned into the nightmare of Friday past. The Girl had stomach pains, ear ache, sore feet.

At 10 pm I got up and gave her Paracetamol with Codeine and went back to bed.

At midnight I got up because she was moaning. She seemed fine, so I tucked her down.

At 2 pm, she woke me up singing—yes, singing. I yelled at her to “Shut up the singing and go to sleep. Mummy’s turning into a grizzly bear and once that happens, it’s all downhill from there.” She quit the singing and chatted to Lilly Lion and Dead Cat for another hour.

At 4:30 am, we were both still awake, only the Codeine was wearing off and she began to wail. I got up, gave her Paracetamol liquid, took her to the toilet, and went back to bed.

At 5 am I got up because it was pointless trying to sleep.

At 6:30 am she fell asleep and stayed that way until 9 am when I woke her.

I had a repeat performance on Sunday, and, to a lesser extent, again on Monday. In desperation I called the Hospice community nurses and asked for help. Two nurses came straight out. They assured me I was not being “a big sookie-bubba who was asking for way more than she deserved” (Not the way I posed it, but the way I felt). They told me I was doing fantastically well, and that it’s dreadfully hard with someone you can communicate with, let alone someone you can’t.

The next day I spoke to my mother. She told me to go and have my hair done and get a little pampering and that she’d pay for it. (I did not let her forget it)

I have people tell me they could not lead my life. They tell me they could not do what I do. But here’s the thing…

I’m so utterly, utterly grateful.

I’m on a miniscule income and I make sure I cope on it. But you know what? I am so frikkin’ grateful for that income, I can’t even tell you. There are countries around the world where people in my position simply have to do the best they can. I’m sure they, or their loved ones (maybe both) live tough lives then die early.

I’m grateful for the community nurses at the Hospice who keep a constant check on how we’re tracking. I’m grateful that they know what I’m going through and have access to the resources to help me. I’m grateful for Sasha, my wonderful counsellor, who tells me I’m doing great, and then sits for 55 out of our 60 minutes to listen to me drivel on about how my book is going.

I’m grateful for my sister who calls me and tells me how much she loves me, and gives me more support and love than I ever knew a sister could—and that’s saying something.

I’m grateful for all my friends wherever they are. I’ve developed friendships all over the world through my blog and my writing. I have the most spectacular bunch of people spread across America, Britain, Australia, and a million other places who cheer me on and send their wishes, their love and their support. I cannot say how much this means. (I even had someone in Mongolia who dropped by my blog. I’m still wondering what they made of it)

And yes, I’m grateful for a mother who may not remember, but who reaches out when I need it.

I’m grateful for a Girl who’s given me more joy than anyone could know.

The dog—I’m not so sure about …

3 Comments

Filed under Uncategorized

Happy Birthday, Baby

My GirlDuring the past two months while I was slacking off my blogging duties so I could promote my book, The Candidate’s Daughter, wrestle the yard into submission, make a thousand pots of marmalade, and attempt to clean the house, life went on. Events came and went, we got older one day at a time, and, yes, the Girl had her birthday.

Now, if you’ve read posts like, “A Wonderfully Warm Welcome to Pauline the Elephant,” or “It’s All About the Presents,” you’ll be aware that there are two events in the Girl’s calendar of equal importance. Her birthday is one of them and she’s acutely aware of how close it is.

This never fails to astound me. My Girl has limited communication. She has little comprehension of days of the week. Time has virtually no meaning to her. She cannot read. Numerical values have no place in her world. Her version of Cookie Monster’s signature song begins, “P is for Cookie…” I have no idea what her IQ is. If a person’s IQ were based solely on the ability to identify the proximity, time-wise, of one’s birthday or Christmas, she’d be quids in for a Mensa rating.

Take the week of her birthday. This year, it fell on a Sunday. We invited the Girl’s brother, the Chukker Boy, and the Girl’s uncle, appropriately named Uncle Plunkle, along with his lady, Joey-nana and her daughter. As per every birthday since the Girl was sixteen, we celebrated it at Valentines Family Restaurant.

The good news for me was that because we numbered four or more, and because we were dining on her actual birthday, the Girl was eligible to eat for free. In sixteen years of celebrating the Girl’s birthday at Valentines, it’s the first time we’ve scored a free meal because there were always only three of us. That’s right, Valentines got us back for all those years I got the Girl in as a seven-year-old.

Preparations for the day began weeks in advance. Determined I wasn’t going to be brow-beaten over presents and Valentines for weeks in advance, I avoided any mention of it. Regardless, the Tuesday preceding her birthday we drove past Valentines and I noted the way she peered out the window gazing wistfully at the front entrance, then swivelled to watch it disappear behind us. Nothing was said.

On the Wednesday as we passed, she uttered the word, “Birthday,” and fidgeted pensively.

By Thursday she showed signs of growing agitation—she craned to view the restaurant as we passed, and made small throat noises. That should have clued me in to what Friday would bring.

Howling—that’s what Friday brought. Head back, gob wide howling. I can only assume her internal Birthday clock was running hot. We zoomed past Valentines with her pointing back and yowling, “Valentiiiiiiiiinnnnnnes,” at the top of her lungs, and me yelling, “Not today! It’s on Sundaaaay!”

Ditto with the return trip.

Saturday was no better. All we heard about was Valentines. The day lasted around a month and a half. By the time Sunday rolled around, I would have happily allowed myself to be carted off wearing elongated sleeves tied at the back and a bag over my head.

Sunday opens with the Girl wanting to wear her pretty summer dress with her Pooh Bear sandals. Every year it’s the same. I tell her it’s mid winter and she’ll wear something warm. She acquiesces but only because she knows she has presents in store.

We arrive at Valentines fifteen minutes early. The waitress seats us and asks if I’d like a drink. I check my watch. “It’s a little early,” I tell her.

“We’ve got a lovely Villa Maria chardonnay,” she tells me.

I’m tempted. Nobody else has arrived and the Girl is demanding presents. I tell the waitress to make it a big one, then give the Girl her first present, the jersey I bought her with the doggie print on the front. It’s not a CD or a game. She gives it a disgusted once over and flings it aside just as the waitress returns with my drink.

“Presents,” the Girl is telling me.

I slug the wine back so fast, my taste buds are going, “What the hell was that?” when the Chukker Boy arrives.

“Happy birthday,” he tells the Girl.

“Presents,” she replies.

He slips a rectangular package across the table and she opens it, saying, “Games.”

While she’s inspecting the games, Uncle Plunkle and Joey-nana arrive. They also wish her a happy birthday. They’re also met with demands for presents. They pass a rectangular gift across the table. The Girl tears open the packaging. It contains coloring books and crayons. She’s delighted.

So far, the day is meeting all expectations—games, coloring books and crayons, followed by a slap-up feed. This is a girl who does not appreciate surprises. She is, however, prepared to overlook the disappointment of the doggie jersey, because she’s thrilled with her other gifts.

When all presents have been opened and examined, she wipes out a plate of foods that should never be served in the same restaurant, let alone on the same plate. She eats amazingly well for someone in her condition, but the day has taken it’s toll. We’ve no sooner finished our desert, and she wants to go home. We wave our party guests off, and head to the car, knowing another successful birthday is out of the way.

It’s a birthday I didn’t think she’d see.

It’s just as I plunge the key into the ignition, and say, “Did you have a lovely time?” I realize that her internal clock ticks over.

“Christmas,” she tells me.

“Excellent,” I mumble as I start up the car. “I can hardly wait.”

It’s now August. I have no idea if the Girl will make it to Christmas, so next month we’ll put up the Christmas tree.

What’s the point in waiting?

And at least I’ll have three weeks to decide what to do about the presents …

8 Comments

Filed under Christmas, Parentlng alone, Uncategorized

The Learning Curve

Chookie Lou's PlaceI can’t believe it’s almost two months since I posted here. For a while there, I thought my life was about to be funneled into caring for the girl with little time for anything else. In January, we were given six months. Here it is August already. There are moments I can’t believe we’ve made it this far.

We had her birthday in June. We went to Valentines family restaurant. On our way out, she asked about Christmas. Some things don’t change.

Some do.

The Girl’s blood tests tell us that her liver is in ‘terrible shape.’ So what’s new? Her liver has been in terrible shape for I don’t know how long. Over the past six months, I’ve been hoping for the best, and expecting the worst. We’ve had periods of wellness followed by bouts of disaster which have been resolved back into periods of wellness. I’ve had some amazing support along the way. One thing I’ve learnt is that this is a journey that requires a lot of support. And good decisions.

So here are a few of the things I’ve learnt that help me deal with each day as it comes:

If mealtimes become difficult, don’t sweat it. Appetite is often the first thing to go. This time last year, the Girl would eat anything and everything—and often things she shouldn’t have. Nowadays, it’s hard to find anything she wants to eat at all. She’ll request roast chicken, then push it away untouched. She’ll demand toasted cheese and onion sandwiches, only to find she can’t swallow them. I made pork dumplings after she bleated bout them for an entire day, only to have her eat two, choke, and leave the rest.

For a caregiver, self-preservation is the key to surviving this journey. I’ve learnt to prepare whatever meals are easiest. If she doesn’t eat it, I’ll make something else that’s easy. Canned corn has become my trusty backstop. If that fails, it’s a meal replacement milkshake. Last week she had a Goody Gumdrops ice cream and a meal replacement drink for dinner. It played havoc with her blood sugars, but I’ve learnt that sometimes it’s about quality of life.

Pain medication has been another learning curve. Offering her stronger pain relief sounds like a no-brainer. What isn’t obvious is that pain treatment comes at a cost. The downside of her pain relief is constipation. With her liver functioning as poorly as it does, it can take as little as a day for toxins to build up in her system. If I give her Paracetamol with Codeine, I’ve learnt to follow it up with a laxative. I now administer Paracetamol and Codeine along with a laxative as a matter of course. It’s not always easy to work out her pain levels. She has a high pain tolerance. But despite the Girl’s lack of communication, I’m getting better at figuring out when she needs it.

I’ve learnt that because the Girl’s liver isn’t functioning properly, it doesn’t distribute glucose as it should. That means if her evening meal isn’t reasonably substantial, her blood sugars will drop overnight. If they drop in her sleep, she could easily slip into a coma. Now, I check her blood sugars at bedtime, during the night, and first thing in the morning. I also keep a jar of jellybeans on hand for times when it drops too far. I can’t tell you how many breakfasts a delighted Girl has kicked off with a handful of jellybeans.

I’ve learnt to accept help. This has been the the biggest concession for me. Up until recently, I thought it was my duty to soldier on; that because my Girl spent time in care, that she deserves it, that this is her time. She loves her home and her room. She loves her routine, her music and her Playstation. There have been times when I was under so much pressure, my stress levels rose and I felt like I was failing her. I’ve come to realize that if I’m to last the distance; if I’m to be there for my Girl, I can’t do it on my own. I have a lady who comes in three nights a week to sit over while I sleep. That’s funded by the state. I can’t say how grateful I am.

And finally, I’ve learnt that taking breaks is vital. Because the Girl is more at ease in her own environment, it’s easier for me to go away than to send her anywhere. This weekend, the Girl’s wonderful art teacher has offered to care for her while I spend three days with my sister, Chookie Lou. The picture above is from the front windows of Chookie Lou’s home. It’s not too shabby. I’ve stayed with Chookie Lou a total of three times this year. It’s not easy to leave my Girl behind. I’m reluctant to take time away from her while she’s well. I don’t want to miss any of the time I have left with her. On the other hand, if I’m going to stay the distance, I need to keep my sanity. Last Wednesday night, she wasn’t well. She dozed for an hour during the night and finally drifted off to sleep at 6:15 am. It’s not the first time. I wind up a zombie the following day. I know I’m a better mother and a better caregiver when I’m rested. It’s a wise decision to take the time away. But I miss her more than I can say.

Lessons have a habit of coming along when we need them. Some lessons are tougher than others.

If you’re caring for a terminally ill loved one, take the path of least resistance, grab any help you can, and take breaks when opportunity arises. Those opportunities may not come back. Looking after yourself doesn’t mean you’re weak. It doesn’t mean you’ve failed. It means you’re thinking rationally. It means you’re in this for the long haul.

And I applaud you for it.

Leave a comment

Filed under Terminal Illness

Another Mark on the Checklist

candidatesdaughterebook_HI_RES-1Yes, I can check one major item off my checklist: my book, The Candidate’s Daughter, is finally published and available. It’s taken some work. I’ve been fortunate enough to have a fantastic editor in Sara J. Henry (author of Learning to Swim, then A Cold and Lonely Place), and some fantastic support along the way from friends and family. If you’re interested, you’ll find my book here: The Candidate’s Daughter

The reason I mention it now is because I know this journey I’m on with my Girl is getting tougher. Last night she didn’t want her dinner. She complained of sore legs, sore arms, and ear ache again. I gave her Paracetamol, rubbed her arms and her legs, gave her Nilstat for oral thrush, and put her to bed. At 1 a.m., I heard her stir so I got up.

Her blood sugars were a staggering 1.8. So it was out with the midnight feast of jellybeans and Fortisip, a liquid meal replacement formula. I also have a diet variety but that doesn’t get her blood sugars up. Fortisip does. Two hours later, with her blood sugars at 6.2 and her “Hypo” sweats abated, I finally went back to bed.

This, I know, will not get easier. For some time now, I’ve been in somewhat of an emotional void. I haven’t known how I was “supposed” to feel. If that sounds weird, let me explain. Up until now, we’ve had our ups and downs. In between periods of apparent wellness, we’ve hit lows during which we’ve made panicked dashes into the hospital. All the while, I’ve kept at my writing. All the while, I’ve been totally focused on getting my work up online. Because that’s the only part of my life that isn’t about my Girl. It’s the last sliver of my existence that’s totally mine.

And very soon, that will disappear.

I’ve been told by the experts that this journey I’m on is not a sprint—it’s a marathon. Ahead of me are hills and valleys that will test my edurance, that will push me to the very edge and change the way I live.

We all have this romantic notion of the family sitting around the bed of the terminally ill patient, holding their hands until that final moment when their eyes blink momentarily open, and they say, “I love you all, and thank you.” There’s a moment of suspense, a faltering breath, and then they’re gone. A few sniffles over a peaceful passing.

That may happen, but during the time leading up to this point, it’s a totally different story. An emotional wrecking ball is swinging the carer from one extreme to the other, and with every swing, their emotional resolve wavers and their physical energy takes a hit. There are fits of rage at what’s happening to their loved one; there are moments when they’re pushed to their absolute limit, and the fatigue and exhaustion feels like a tsumani has crashed down on them, sweeping the very ground out from under their feet.

I guess I’m fortunate. I have the support of my family and a range of amazing services offered by organizations like the Hospice. I know what’s coming. I think I’m prepared for it. I also know I’m not.

But at least I can look back and know that I’ve completed the goal I set myself—I’ve got my work out there. I can put my toe to the starting line knowing I have some closure on that front.

Now it’s time to concentrate solely on my girl. It’s time to step up to take that first next step on that marathon. It’s time to throw everything into making the last moments of my Girl’s life the best they can be. It’s time to start saying goodbye.

Wish me luck.

14 Comments

Filed under Coming to the End, Uncategorized

This Is What I’ve Come To…

Beach Hats MandatoryI’ve been the full-time carer for The Girl for over eleven years now. Some of that, I’ve worked part time, but nothing of late. During the course of this time, my life has changed by small, seemingly insignificant increments. It was only today that I realized how much those changes add up to and how differently I see our world. For example, these days:

A shower in relative peace is a luxury.

Styling my hair consists of aiming the drier at my head while I’m applying makeup/cleaning my teeth/unblocking a drain; and waiting until my hair’s stopped dripping.

Application of said makeup consists of slashing a couple of eyebrows on with a pencil and flicking a mascara wand at my lashes (preferably without blinding myself).

A telephone conversation initiated by me begins with, “Yes, I’d like to make an appointment to see the doctor, please…”

A telephone conversation initiated by someone other than me begins with, “So how’s The Girl today…?”

A family outing is comprised of twenty minutes at a budget hairdresser, twelve minutes at the video store, and seven minutes driving at 10 kph over the speed limit so we can get home before The Girl’s blood sugars crash.

Visitors are people who come to a) deliver packs of adult diapers b) ask if I’d like to change electricity providers c) collect The Girl in an ambulance for another dash to the hospital.

An evening out arises when the company contracted for support sends a sitter so I can do something life affirming, and I wind up wandering around the local mall because I can’t think of anywhere else to go.

My hobbies include housework.

My preferred gardening methodology is termed ‘perma-culture.’ That’s posh for ‘neglected.’

The drapes at the rear of the house are permanently drawn so I can’t see how perma-cultured my back yard is.

The gym is a distant memory. Yoga is a more recent memory. The dog never lets me forget it.

30% of all meals are eaten standing up.

The remaining 70% of all meals eaten while sitting are interrupted by a) a bathroom break b) a coffee spill c) a sudden and inexplicable need to find a CD that’s been lost for seven weeks.

Ironing is something I do on special occasions. I never iron.

It takes me an average of three seconds to locate my gardening shoes, my scuffed and tatty flat shoes, and my sneakers.

My high heels are somewhere in the closet under a layer of dust.

Jeans without holes are the new black.

Jeans that require heels never leave the closet.

Bedtime happens at sundown.

The sun rises an hour after I do. In winter, it’s two hours.

A soft moan in the night means either the dog is dreaming, or the Girl needs Paracetamol.

Cancelling four consecutive lunch dates with the same person due to “unforeseen circumstances” is the norm.

A two-hour shopping excursion results in groceries.

97.6% of all conversations include the words, “blood pressure, blood sugars, medication, and poo.” Often all within one sentence.

Xbox is another word for “Escape.”

Booker Dewitt, the lead character in the game Bioshock Infinite, is counted amongst my friends.

Six hours of unbroken sleep is unheard of.

Socializing requires the phone or the computer.

“High Alert” is standard operating mode.

“Red Alert” is one level above “High Alert.” The consensus is that if “Red Alert” continues to recur at the current rate, it will be downgraded to half a level above “High Alert,” and “Meltdown” will supersede it.

Aspiration has everything to do with the involuntary inhalation of food or liquid particles, resulting in pneumonia, and nothing to do with career goals.

The way I live is of my own choosing, and I wouldn’t have it any other way. One day my world will expand again. But one huge part of it will be gone. It’s truly a doubled-edged sword.

If you know someone whose world has contracted while they care for a sick loved one; if there’s someone close to you whose life is dominated by difficult circumstances—even if it’s of their own choosing; do something for me:

Give them a call. Let them know you’re thinking of them. Drop in some small token of your admiration for them. It doesn’t have to be diamonds. A small bunch of flowers, a couple of muffins, a handmade card can make the difference between hope and despair. Let them know the world is still out there for them; that you’re still there for them. And that you’ll be there for as long as it takes.

From one who knows, it’s more appreciated than you could imagine.

2 Comments

Filed under Terminal Illness

Beautiful Girl, What Would I Do Without You?

My Beautiful GirlThree short days ago, my beautiful Girl was rushed into the Emergency Room. The short story goes that her blood pressure was down, her blood sugars crashed, and her pulse was squiching along at half its normal pace. It turns out she had pneumonia. Today she’s sitting up in a hospital bed watching Pokemon and demanding Christmas be brought forward. She’s stunned the medical staff and her estimated date of discharge has been set at either Monday or Tuesday.

With the benefit of hindsight, none of this shocks me. Yes, I’m amazed we still have her. Especially after the events of the last few days. But this girl has more lives than a bagful of cats. And that’s given me pause to think about some of the things I love about her.

Her Appreciation for the Arts: Some years ago, I took her to the Disney on Ice production of Beauty and the Beast. The skater in that Mickey Mouse costume may well have been slated for his lacklustre performance on the night, but for at least one small member of the audience, his stumble and subsequent face-plant on the ice was the highlight of the evening and will be forever remembered with much amusement.

Loud Running: For a Girl with no appreciation for time constraints, there are so many attention-grabbers that can hold you up. Like Walking-While-Cuddling-Dead-Cat, Heading-For-the-Bathroom-While-Inspecting-CD’s, or the equally freeze-you-in-your-tracks Going-Out-to-the-Car-While-Checking-Contents-of-Lunchbox. When she was more mobile, I countered this lack of urgency with Loud Running. It was achieved by shouting, “Loud Running” and The Girl instantly increased her pace while yelling at the top of her voice. It was a one-time offer that remained in effect for a maximum of five seconds, but the results were instantaneous. I swear, magic could not have achieved the same results. I wish I had household cleaners that worked that well.

Her Cultural Awareness: I’m proud and amazed that my Girl can recite an entire Maori Haka, or war chant. Despite the fact that I find the phrase, “Yowdie Yowdies” in the second stanza highly questionable, I know that she’s picked up enough of the language that native speakers actually recognize it. Like the lovely Maori taxi driver who wheeled her up to the door and told me in astonishment, “She can speak Maori.”
“Yes, I know,” I told him. “I bloody wish she could speak English.”

Her Perennial Optimism: The world must be a wonderful place when you’re constantly looking forward to something. Birthdays and Christmas rotate on an annual basis. You just get one out of the way, and the other automatically slots into place.

Her Ability to Prioritize the Important Things In Life: Presents, mashed potato, art class, cheese and onion sandwiches, Playstation, lemonade, going to the video store. What more could a person possibly need?

I love that her view of life is so simplistic. She knows what she likes, and her expectations are few. She’s brave, she’s funny and she has no preconceived ideas about people. Until they go up against her in a battle of wills, and she loses.

If you take her as you find her, you’ll find a true friend. You bump heads with her, she’ll remember it for life and howl every time she sees you. And she’s taught me more in our thirty-two years than I could have found in any number of books.

But that brings me to an issue that many don’t think about – or maybe don’t need/want to think about. In this age of technological advances, as society strives evermore toward beauty, intelligence, and perfection in our future generations; and parents not only have the option to choose their baby’s sex, but now have the option to eliminate offspring with inherited illness and genetic defects, what happens to those children of the future born with disabilities? As we move forward, congratulating ourselves on our ability to weed out the ‘damaged,’ what happens when a section of our society is diminishing?

Will society become less tolerant; less accepting? Believe me, it’s only a scratch below the surface. I spoke to a woman only yesterday whose daughter has five children. For some reason I can’t even begin to comprehend, the general public feel it’s their right to pass judgement on her – to make comment on her choices. She said people will actually approach and ask her if she knows what contraception is; or whether she knows that population levels are already too high. I know what she means. If you’ve read my blog, “Moments I’m Not Proud Of,” you’ll see that I’ve had my own fair share.

And if this is the reaction to a large family, what will the reaction be to the parent who chooses to bring a child less perfect into the world? That they’re stupid? Selfish perhaps?

This is not a rant extolling the virtues of abortion over pro-life, or vice versa. And, I understand that with the advances in medical screening it’s now possible to detect illnesses that no parent would wish upon their child. And that given the choice, many would opt to terminate rather than inflict a future of pain and physical torment on their child.

But what if I’d made the choice not to have my girl; if I’d taken that other road in which she wasn’t a part of my life? Sure, there have been times I wouldn’t wish my lot on my own worst enemy. Of late, I look around and I wouldn’t exchange it for the world. If I didn’t have my Girl, would I be the person I am now? Would I have learnt the lessons I have? Strived to be as accepting as I am now?

And how much would I have missed?

I’m just saying…

6 Comments

Filed under Learning to Love a Disabled Child, The Joy of Living With a Disabled Child